It's been a rough 16 months, full of setbacks, and baby steps. This time last year, I questioned my sanity, while desperately searching for something, somebody, anybody to make it different, better, or bearable.

Now, disease is present, pain is present, but there's peace in the process...

I am where I am. I'm not where I'm not. All there is to do today is what there is to do today...even when the "to do" is to get out of bed, wash my hair, or get a colonoscopy.

I am proud of myself. I'm proud of the person I am becoming and proud of all of the people who--literally or metaphorically--take a shot to the head and keep on fighting.

Life is messy.WE are messy.We are also strong, capable, amazing individuals with a profound ability to make a difference in this world...regardless of our circumstances.

Perhaps Edward Everett Hale said it best when he said: I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.

Whether that something is tying your shoes, speaking a sentence, or writing a blog post, as Gabby Giffords reminds us, do it with passion, love, and courage.

09/07/2011

Bottoms up. It's official. Last night marked my last dose of Ivermectin. I made it out alive...even if it was by the skin of my teeth. Thirty days on enough medication to dope four horses--I'd be lying if I didn't say I'm pretty impressed with myself.

Now, the true test.

Was it worth it? Will it make a difference? Will my wormy Mcworm worms stop making an appearance? And, most importantly, will I start to feel better?

Truthfully, I'm nervous. In the last two weeks, I feel like I've regressed six months with pain, exhaustion, neuro symptoms, everything. To complicate things, I've been off antibiotics for over a month (is that making things worse?). Hopefully, it's not a sign of things to come.

08/17/2011

Sometimes it's hard to know how much to say in a blog post. On the one hand, I have my thoughts, feelings, and experiences. On the other, I take responsibility...not only to share things, but to make sharing valuable.

When bad stuff happens, I want to talk about it. I want to tell you how bad and desperate and lonely it gets. At the same time, I don't want to complain. I don't want to whine. I don't want to open up a pile of yuck with my writing.

Here's what I don't want to say...

The last 24 hours have been horrible. Just gross (physically and mentally). I tried to do something to make a difference (ie: stop repeated harassment on a message board). Instead, I became a target of said harasser....the stopper of progress...the enemy....while everyone else (almost) stood idly by.

Consequently:

Some nutso on the internet sent me nasty-grams.

I left one of my favorite Lyme groups 'cause I couldn't stand the drama.

I was called names and insulted by more than one person.

I am seriously questioning several "friendships" I previously valued.

Publicly, I tried to stay calm. I stated my concern, didn't poke the bear, remained respectful, apologized to one person...whom I inadvertently offended...no less than 15 times. Privately, I'm disillusioned.

Can people even have a conversation anymore without mudslinging?Has human respect and decency completely gone out the window?Does the squeaky wheel always get the grease?Why are people applauding me privately, but silent on line?Has the whole world lost its head?

Logically, I know it's not personal. People are "upset" waiting to happen. We want someone to punish for our flat tires, messy finances, sad news, and painful disease. We're also easily confronted. No one wants to stand up to a bully or be the odd man out. We want to be liked.

I know this all too well...

It's not the end of the world. I get this. Life goes on. I'll find new true friends. People will come around. I'll get over it. In the meantime, it's hard.

Note to self (and maybe you):

IF

If you can keep your head when all about you Are losing theirs and blaming it on you; If you can trust yourself when all men doubt you, But make allowance for their doubting too; If you can wait and not be tired by waiting, Or, being lied about, don't deal in lies, Or, being hated, don't give way to hating, And yet don't look too good, nor talk too wise;

If you can dream - and not make dreams your master; If you can think - and not make thoughts your aim; If you can meet with triumph and disaster And treat those two impostors just the same; If you can bear to hear the truth you've spoken Twisted by knaves to make a trap for fools, Or watch the things you gave your life to broken, And stoop and build 'em up with worn out tools;

If you can make one heap of all your winnings And risk it on one turn of pitch-and-toss, And lose, and start again at your beginnings And never breath a word about your loss; If you can force your heart and nerve and sinew To serve your turn long after they are gone, And so hold on when there is nothing in you Except the Will which says to them: "Hold on";

If you can talk with crowds and keep your virtue, Or walk with kings - nor lose the common touch; If neither foes nor loving friends can hurt you; If all men count with you, but none too much; If you can fill the unforgiving minute With sixty seconds worth of distance run - Yours is the Earth and everything that's in it, And - which is more - you'll be a Man my son!

08/02/2011

It's a funny thing about blogging. Some posts, I write for you. Others, I write for me. Today, gratefully, I'm writing for both of us. For the past 72 hours, I've been more than a little confronted about what to do next with my medical treatment. On the one hand, I've been told I need a high (controversial) dose of Ivermectin to eliminate my parasite problem (a common concern for Lyme patients). On the other, I'm nervous. IF I do this, what will happen to my brain, liver, and stability?

I could weigh the pros and cons.

Pros:

Not much yuck could survive this dosing

If I eliminate the parasites, I have a better shot at beating the Lyme

"She's choking on the smokeof unthinkable choicesshe is haunted by the voicesof so many desiresshe's bent over from the business of begging forgivenesswhile frantically running aroundputting out fires."

07/19/2011

My Acupuncturist:Your heart's out of balance.Me:How do you know?Her:Your face is red and you talk a lot. Me:Really???Her: Yes. Now, show me your tongue.

And round and round we go.

Turns out, my tongue is disgusting. Something I knew going in, but her reaction confirmed it. In her words, it is exhibiting signs of both heat and dampness (white fur=dampness; red dots=heat).

See what I mean?

I know.Lovely...

The tip tilts down; the end is red. In Traditional Chinese Medicine that indicates heart imbalance, dampness with heat. In Western Medicine that indicates oral thrush (candida overgrowth). Either way, it's not good. It's also starting to burn--yippee. Time to bust out the coconut oil and do some oil pulling.

On a separate note, treating for parasites (both with meds and acupuncture) is bringing interesting results. For a while, I've seen all sorts of things "exiting the building," but today's find proved most fascinating--three different types of something: one papery, one worm-like, and one resembling algae. I'm starting to feel like a CSI Investigator.

Not bad for a girl who's got nothing wrong with her...LOL.

Altered Today: Sharing the yuck, realizing I need a manicure and a lip wax

06/07/2011

I'm jealous of friends.I'm jealous of enemies.I'm jealous of rich people, tourists, movie stars, moms, people who can sleep, people who can work, people who eat bread, people who make bread, people with good veins, people with more treatable/recognizable illnesses, and practically anyone who gets through the day without parasites, pain, doctors, pills, IVs, crying, or dying.

It's an ugly feeling; one I want desperately to Hide...Ignore...Replace.But I won't.

There's so much I want out of life...to ride an elephant....to publish a book...to kiss under the stars in Venice....to feel good again...to have a family...to make a difference. I'm glad others have these things, but I want them too. Does anybody else (sick or well) struggle with jealousy? How do you cope?

It was a hard night. Pain crept into my heart, head, and marriage. This is not the life we planned. This is not the life we want. Yet, this is the life we have...filled with disease, fear, and uncertainty.

I am not sure if this is "fixable"-- if I am fixable -- if WE can do this. I know diamonds come from pressure, but so does dust. I just pray we don't disintegrate and end up as the latter.

As I move forward today, I am scared and filled with dread. Perhaps from pain or lack of sleep, but everything's raging: symptoms, sadness, self-doubt, and suffering. The elephant in the room is awake and she is stomping all over my sofa. Hopefully we can outrun the damage before it swallows us whole.

05/30/2011

People are amazing. As I write this, one friend is sitting, eyes jumping back and forth, questioning if she should go to the ER. Another friend is sending her son back to Iraq (on top of Lyme). Another friend's bed bound...wanting nothing more than to get up without fainting and be with her family. It's sad. It completely depresses me. It also makes me profoundly appreciative for the strength of the human spirit.

We hear a lot about heroes: people celebrated for rushing into battle, fighting crime, and saving children. I LOVE those people. I am so thankful for them. But it also has me thinking. What about the other folks...the ones who don't have a day or get an award?

-The mom who refuses to have surgery on her shattered knee or take pain meds for six months because she doesn't want to hurt her unborn child.-The person who can't walk and can't breathe, but still takes a moment to ask how you're doing.-The spouse who holds you while you wince and cry...even though he feels helpless to stop it.-The dad who tells his kid "everything is going to be ok," even though he's scared that it won't.

I have met these people...and many, many others. And all of them remind me what I treasure most about humanity: People are good. They are also strong, resourceful, and capable of wonderful, amazing things.

Happy Memorial Day to all of the really good/strong/resourceful/capable people I know and the ones I have yet to meet. Your courage is my strength and your friendship my reward. I only hope one day I can return the favor.

ALTER EVERYTHING What do you get when you combine a creative, Type A personality with Chronic Lyme Disease? A choice: A) Be swallowed whole or B) Reinvent yourself--daily.
Alter Everything is my quest to respect "A" and embrace "B" as much as possible. Here, I recount my daily adventures in pursuit of an altered life. –Kathy Tagudin